Nurturing Compassion and Stewardship
This is my side of the fence
Not mine to choose
It might look bleak for a time
But it’s my side, it’s my place.
Patience and perseverance, slowly regaining a foothold
The bloom will reappear
The contrast can’t be missed
A splash of sunshine, lifting one’s spirit
Not meant to feed or graze
Just enjoy and gaze
Making it greener on my side
As my roots feed deeply.
I’ve endured five flights with smooth take offs and well executed landings while in ABI (acquired brain injury) mode. On flight number six I crashed. Don’t know what hit me. Take off didn’t go well and landing was a disaster.
I took my first plane flight in ABI mode to the Caribbean a year ago. It was a test flight to see how I would fare. This was on recommendation of my OT (occupational therapist) who many times during my rehab would ask me, “Have you done …. since your accident?” If the answer was a no then we would outline the possible and probable challenges. With that information and likely projection we would work out a plan that would hopefully ensure a high degree of success.
I recently arrived back from a holiday in the Caribbean. The flight down (number 5 in ABI mode) was routine like the four before it. It had me wondering more than once why some much planning had gone into flight number 1.
Reflections of my most recent flight
Time and again I have been reminded to plan for the worst case scenario. Plan for the worst but hope for the best. When scheduling events and activities, my default mode should be to plan only the number of activities I can manage if all of them ended up in ‘worst case mode’.
As I reflect back on the most recent plane flight, planning for the worst has taken on a new dimension. The bus trip between the airport and the resort had taken longer than the previous time. Not much to do about that. With the recent rains many of the washouts had only been partly repaired making the trip much slower, longer and rougher than expected.
The initial arrival at the airport seemed to go fine. Once we had shed our checked luggage we prepared to go through customs. With the lineup being exceedingly slow, the stairway steep and the area hot and stuffy, I decided instead to go outside, get some fresh air and enjoy the quiet surroundings. (With only two international flights a week, the area outside the airport is a very calm place.)
After about 45 minutes I figured my traveling partner was near the front of the line, ready for customs inspections. I made my way back into the airport and excused myself as I pushed passed the waiting passengers. It was hard to do that unobtrusively as the waiting passengers tend to fill up the whole width of the stairway. Fortunately no one seemed visibly annoyed at having me weave past them. The visa procedure went off without a hitch. The customs inspection not so.
I was asked to remove my water bottle from my carry on luggage. I politely informed the inspector that I didn’t have a bottle. The second time I was ordered to open my luggage. Oops, there was the water bottle. Long forgotten. Fortunately there were no repercussions to my polite challenge.
After completing the customs inspection I was now confined to the hot, crowded and noisy waiting room on the second floor of the airport. The air conditioner was better at adding to the noise than at cooling the air. Waiting for 45 minutes in this space was too much for me. I was overwhelmed and went into sensory overload.
During the four hour plane flight I was alert and somewhat on edge. Unlike the previous five flights, I did not sleep one wink. By the time we landed I was overwhelmed and incapacitated due to a much more severe bout of sensory overload. I stayed in my seat for the next 20 minutes trying to pull myself together. Eventually, with the plane almost empty I felt compelled to exit. I didn’t want to have to deal with the extra attention that would accompany being helped off the plane.
The walk to the exit of the plane was slow and laboured, seeming to take forever. However, getting off the plane was minor compared to making my way to customs and the luggage retrieval area. My progress was slow and laboured as I shuffled along as best as I could manage.
I looked around for a courtesy shuttle but there were none in sight. The passengers who were being given wheel chair assistance seemed much more in need than me. And so, I continued to shuffle my way down the long corridors, thankful for a couple escalators and one moving sidewalk. While an escalator can be helpful, when I’m dealing with too much sensory loading, they can be tricky to get on and off since my balance and coordination are seriously compromised.
Reviewing my most recent flight
In working with an OT for the past 24 months, she has trained me to become my own detective. In looking back on the trip I have not been able to determine what factors caused my most recent flight to be so difficult. Also, I didn’t have the option to change my course of action during the 12 hours it took from leaving the resort by bus and arriving at home.
However, what I can change is to plan for a worst case scenario for my next flight. Having had five successful flights I figured I had seen the worst case, which was far from disastrous, while flying and have found it to be very manageable. So, no additional thought or planning had been considered in my most recent flight.
The most recent trip made me realize that I need to find as many ways as possible to reduce my sensory loading. The less familiar the surroundings and procedures the harder it is to make contingency plans. At the same time, the less familiar the surrounds and the procedures, the greater the risk of experiencing sensory overload.
New travel plans to consider
To reduce my risk of sensory overload I will make plans that look like I’m being pampered with first class service. I need to request preferential treatment whenever possible. In going through the departure procedures, making arrangements for VIP privileges should help. (Maybe that’s why politicians look great after a long flight.) This could include a separate lounge, ostensibly with better air conditioning and hopefully much quieter.
I don’t plan to request preferential seating in the plane because I don’t know whether that would make any difference. Though requesting a window seat is less disruptive. That avoids having to deal with other passengers who might want to get in and out of their seat during the flight.
I would arrange for a courtesy shuttle if I’m in a large airport. That would limit the amount of walking as well as the distance I need to carry my luggage.
Misgivings
I’m not sure how convinced I am about requesting preferential treatment. I would feel odd getting special consideration if I don’t need it. Besides with the odds being that low, one in six, why make a fuss.
My daughter told me that such thinking is nonsense. Her advice is to plan for the VIP treatment and then just enjoy them, whether they are essential on that trip or not. Besides no one knows why I’m getting VIP treatment. For all they know, I’ve paid for it because I’m one of those hoity toity travelers that feels entitled to receiving first class treatment all the way
Really. Why should I care what others think. I just need to tell myself, “Don’t sweat the small stuff.” The goal is to arrive at my destination in fine form.
At Christmas time we pull names before getting together with extended family. The intent it to have each person buy a gift for one person. To make the occasion a bit more special, the ‘giver’ will include a personalized poem with the gift. While the ‘poem’ might not meet a minimal literary standard, it is much appreciated by the person receiving the gift.
I received a gift with a poem that left me feeling much appreciated. At the same time, it left me quite upset. I was surprised by my ambivalent response. It was like being torn, like being two different people.
The poem and the gift acknowledged my ABI (acquired brain injury) status. The injury puts me in the broader category of functioning as a neurologically atypical person. That in itself was nothing new.
I have been blogging for two years about the challenges of living with ABI and acknowledging my neuro-diverse (ND) status. However, when someone else puts it in writing, something in me changes.
So what changed? When I shared my experiences that match those of a neurologically atypical person, it’s like I only half believed it. The reason I only half believed it is because often as I go through a day or two and maybe even a week I might feel like my old self. I find myself functioning in a manner that does not remind me of my ABI. It’s kind of like being in denial.
When someone else mentions my neurological atypical functioning I hear something different. It challenges my denial. I makes it seem much more real. It makes my current status as ND seem inescapable. That’s the part that made the poem and gift upsetting.
What is heartwarming is that despite my ABI I am accepted and loved. Despite my limitations I am not forgotten or overlooked. The poem reminded me that I am in important part of my extended family.
The support, encouragement and understanding that I receive from within my family helps me look beyond the limitations I experience living with ABI.
Time and again I’m struck by the overlap between autism as it manifests itself and ABI (acquired brain injury). Often I can relate to the coping mechanisms that autistic people choose in order to get through the day or deal with a particular environment. One of the coping activities I read about recently is the choice to go non-verbal.
When I am in a social setting I might be verbally engaged for ten or fifteen minutes. When things get too busy, when the conversation wanders and requires more effort on my part I will experience a level of neural fatigue. At that point I will often choose to go non-verbal. I am still engaged with the conversation, but I will begin to conserve my energy and respond by nodding or raising an eyebrow or some other non-verbal cues. Should my neural fatigue increase I will look for an inconspicuous way to exit from the space.
Social interaction requires varying degrees of cognitive functioning. Over time the cognitive demands will create a level of neural fatigue that I need to address. The sooner I acknowledge the neural fatigue and address it the shorter my recovery time will be.
Recovery spaces
When I’m in a social environment and have reached my limit I need a space that will help me recover. Napping is usually the least helpful option, though spending time in a quiet room is sometimes the best that’s available.
Indoor sounds tend to have an echo or reverberation. The reverberation that most people don’t seem to notice, makes it hard for my brain to relax. Attempts to block out sounds and impressions puts additional demands on my brain.
When I’m outdoors there are so many sounds at a variety of decibel levels. However, it isn’t the decibel level that stands out, but rather the way different sounds flow together. Sounds are somewhat muted in their own ways.
Being outdoors in itself isn’t enough. It’s most beneficial to be away from intrusive mechanical sounds. Mechanical sounds such as commuter traffic, heavy truck, gas powered lawnmowers are jarring. The noise level varies greatly and can be unpredictable and startling.
Being outdoors in a natural environment is the most helpful for recovery. The natural sounds tend to be more mellow than mechanical sounds. However, the call of a crow or a blue jay can be quite raucous. While a heavy truck might create a jarring sound, a screeching brake or an engine backfiring, a crow or a blue jay might initially be raucous, but the follow up sounds as they begin to fade have a predictable pattern.
Sounds in a natual setting can better be compared to a symphony. The sounds have a gentleness to them, they have sense of belonging in that space. It’s the gentleness and predictablity of the sound that allows my brain to relax, to recover from some of the fatigue.
Sounds in nature are somewhat predictable. Each habitat, made up of a certain mix of wildlife, has its own symphony of sounds. The sounds have their own cadence as the sounds modulate, changing in intensity or volume. At the same time the sounds are not repetitive. That also contributes to a more restful state.
Natural sounds for Neurotypical people
A study was done some time ago to measure the benefits of walking to reduce stress. One group was assigned to walk for 20 minutes a day along city streets. The second group was assigned to walk for 20 minutes in a park or nature preserve. The study concluded that walking in a park or nature preserve had a much greater impact on lowering the level of stress than walking along a city street.
Sometimes I find that my ABI sensitivities can be used like a ‘canary in a coalmine’. I develop habits or find environments that are critical to my quality of life and my ability to recover more quickly. What is critical for me to function better, often are the same habits or environments that are helpful in improving other people’s quality of life.
Having lived with ABI (acquired brain injury) for almost three years, learning to pace myself has been one of the most important things I need to be mindful of. As long as I am reasonably mindful of how much I take on, or what emotional loading I expose myself to, life can be manageable. In fact, life can be very enjoyable a majority of the time.
The last while, which includes Christmas and New Years, I have been over taxed. I say “the last while,” but I have lost count. It’s just been too long (I haven’t posted since mid December).
I have been struggling with a plurality of physical challenges. Having dealt with chills, aches and pains while feeling nauseous had me wondering whether I was just simply dealing with a flu. It would seem easier if it was the flu. However, the way the symptoms persisted and varied, I knew it wasn’t the flu.
At other times I was dealing with vertigo, blurred vision, coordination challenges, acute headaches, extreme exhaustion, while unable to sleep. In an other life I would have wondered whether I was experiencing stroke symptoms.
I wasn’t sure what to do. I was urged to see my family doctor. I figured there was no point going to the family doctor, because there just didn’t seem anything concrete enough to expect a helpful diagnosis. Being told to rest and drink plenty of fluids just wasn’t worth making an appointment and getting myself into town.
Hopeful respite
A couple of days ago I went to my regularly scheduled reflexology appointment. I was feeling good enough to make the 45 minute drive on my own. I gave myself plenty of time so I could pull over for a nap if I needed to.
As my treatment got underway, the reflexologist asked me how I was doing. With Christmas and New Year’s just behind us, she was expecting an upbeat answer.
I first mentioned the various physical challenges I had been experiencing for far too many days. I then mentioned that a dear friend had been killed in a traffic accident on December 21st.
That changed her approach. She recognized the various physical symptoms as a strong indication that my body was in shock. My physical care had been seriously disrupted as had my emotional well being.
The suddenness of the news initially made it seem unreal. The flash back to my own accident was not helpful. And the inability to pace myself while grieving left me very vulnerable.
The funeral service was scheduled nine days after the accident. I usually have a hard time getting through a worship service without a break or two. I did not and could not remove myself from the funeral service. I also wanted to accompany my wife as she had agreed to share some thoughts and memories during the service.
After the funeral service was over my wife asked if I felt up to attending the internment. That wasn’t the question for me. I was focused on the need to attend. I was looking for closure and hoped that participating in the internment would help. The internment was more difficult than I expected. At one point it took all of my will power to not collapse.
Maybe I shouldn’t have attended the internment. It’s hard to make proper decisions in a situation like that. I probably would not have heeded any advice given to me.
Looking for Recovery
Having learned to accept sensory overload as part of living with ABI, I knew I could expect to need up to four days for recovery. That usually allowed for enough time for recovery. That was usually the price I paid for not removing myself from an environment that was causing me sensory overload.
Grieving seems to override any attempt at self-pacing. My physical symptoms persisted as I struggled with the emotional overload. And not surprising, the emotional overload did not end with the internment.
ABI challenges
A clear challenge with ABI is having a hard time filtering impressions and emotions. I have gradually experienced some improvements over the past three years. I no longer need to pull over while driving when a touching story is being shared on the radio. I have since had a dental experience without needing four days to recover.
The intensity of losing a friend so suddenly is much more challenging than the other experiences of sensory overload. While grieving the loss of a friend it’s not possible to remove myself from the ‘overload’ environment.
The support and care of friends and family has been most helpful. Knowing that other people, even if they don’t fully understand, showing patience and care, helps keep things from becoming overly complicated or causing a downward spiral.
What is Your Only Comfort in Life and in Death
I was brought up knowing life is finite. I was also raised with the following understanding:
That I with body and soul, both in life and death, am not my own, but belong unto my faithful Savior Jesus Christ; …and so preserves me that without the will of my heavenly Father, not a hair can fall from my head; …
Heidelberg Catechism Lords Day #1
Knowing where to search for comfort helps to forestall hopelessness. Knowing is one thing. Being able to live with what one knows sometimes takes time. Gradually my body is catching up with me.
I had two friends come over recently to help me assemble a project. It was a job I could not do alone. It was a job that was easier and therefore safer to do with three people.
I wasn’t sure how doing this job with three of us would go. I know that working alone is cognitively less demanding and therefore helps minimize neural fatigue.
The last time I had done a project with two other people neural fatigue had totally exhausted me after about two and a half hours. That was including the coffee break.
Necessity made me move ahead and invite two friends over. From a cost benefit stance I was okay with needing time to recover from the work party. They didn’t arrive very early so I had time to have everything prepared. I had set out the necessary tools. I had also thought through the process so I was clear that with the three of us the job would be very manageable. There were several things I had overlooked, but that is no surprise.
Looking back
When the job was done, we stopped for lunch. One friend commented that he was surprised how well I was doing. In truth I was pleasantly surprised as well. We had been working for three hours without a break. Even when I sat down to relax the neural fatigue did not catch up to me. A second pleasant surprise.
So, what made the difference? I have some thoughts on the matter. I should because that’s one of the goals of working with an OT (Occupational Therapist). She is training me to be my own ‘detective’ in figuring out what factors work for me and what factors push me to my limit.
There is one key difference between my experience helping my friend at the outdoor education centre and this recent experience. Helping at the centre meant I had to get myself up to speed on the nature and scope of the job when I arrived on the site. This recent job was my project. I had gradually developed an overview of how I would use my volunteer help. I had several days to get the whole process figured out and was ready for it. My brain was on track and barring any unexpected changes, my lack of mental flexibility was a non-factor.
The Day After
The next day I went to check that the walls were level and squared up with each other. To my dismay the front wall was about an inch over from the back wall. Eventually I managed to get the wall moved after dealing with the steel pins that ran through the bottom plate and into the concrete. Two hours of problem solving left me totally exhausted. Enough for one day.
The next day I realized that even though the bottoms of the walls were squared up with each other I could not assume that the top of the walls were squared up. When I check I was out more than I want to admit. Some more problem solving. The challenge was to figure out why the tops of the walls didn’t line up. After about two hours of attempting different things I succeeded in getting everything squared, and level. Once again I was totally exhausted. Two days in a row of reaching my limit. I did not want to experience that for a third day.
Assembling the walls and making sure a measurements are accurate takes some attentiveness. Though not as cognitively demanding as problem solving how to get things squared and level. I was reminded to be prepared for dealing with certain parts of a project to be neurologically fatiguing.
The challenge is to minimize the need to correct errors. While that is the ideal, the reality is usually different. With some of the deficiencies that come with ABI errors are very likely to happen.
Despite some push back on my part I have been convinced to request the help of a rehab assistant to help me develop strategies and organization skills to reduce errors and other disruptions while working through more complex projects.
Being the boss is helpful for some aspects of a project, but it does bring it’s own challenges.
I’m nearing the end of my third year living with an ABI (Acquired Brain Injury). Over time I have be able to recognize and tune into about a dozen signals my body gives me when I’m nearing the limits of my sensory loading.
Within the context of dealing with sensory loading, often someone will ask how I’m doing. When casually meeting someone it varies how I answer the question. My answer would be ‘fine’ if I considered the question a greeting. My answer would involve greater or lesser details if it was a question about my well being.
When someone is asking about my well being a succinct response would be easier. I usually respond with varying degrees of detail. A brief response would be easier and more helpful.
Stop Light Metaphor
I have been thinking about it using the image of a stoplight. Using a three colour response has it’s benefits. As a thumb nail-type of overview it is short and to the point.
Red Zone
When I’m operating in the Red zone it’s a clear message that I’m near my limit or into overload. I’m unable to make casual comments. My neural fatigue interferes with my brain’s ability to properly process what I’m hearing, seeing, smelling, or tasting.
When I’m in the Red Zone my body simply reacts to outside stimuli. When something unexpected happens I react. The reaction is triggered because I can’t anticipate the sudden change or some danger that suddenly appears. In the Red Zone I am easily startled. In some environments, depending on the frequency of being startle, it will compound my neural fatigue.
Along with not processing sensory input very well, my response lacks coherence. In responding to others my thoughts are not very well formulated. I also find myself going onto momentary tangents, a diversion from the flow of the conversation. If I’m responding to a direct question I might miss the main intent of the question.
When I’m operating in the Red Zone physical touch can range from very painful to uncomfortable. The pain can best be described as a burning sensation.
When I’m operating in the Red Zone I regularly find myself humming. Nothing melodious – it’s a tuneless hum.
Yellow Zone
When I’m operating in the Yellow Zone I’m able to make coherent comments in response to what’s happening around me. When I’m in this zone I’m processing conversation and other sensory input with reasonable clarity. However, in this zone it takes too much neural energy to initiate conversation.
When I’m in the Yellow Zone I’m more aware of what is happening around me. That means I’m planning ahead and able to anticipate. As a result I’m not as easily startled by sudden noises, unexpected touch or other changes around me.
In the Yellow Zone I will find myself involuntarily humming as well. When I’m in this zone the humming will be a recognizable tune.
Green Zone
When I’m operating in the Green Zone I am able to initiate conversation. My responses are much more coherent because I’m able to take in what’s happening around me; the sensory input is making sense to me.
When I’m in the Green Zone I will catch myself spontaneously whistling a recognizable tune. That also serves as a reminder to me that I’m doing activities that aren’t pushing me to my limit. It’s also an indicator that I’ve cleared the sensory accumulation of the previous day or previous days.
Stoplight Metaphor
Using the stoplight metaphor is giving me a better gauge on how my sensory loading that day is being managed.
Even if I don’t respond to greetings by announcing one of the three colours, it does increase my mindfulness. That is one small way in which it’s good to be around other people even if I’m not functioning in the Green Zone.
When I’m in the extreme end of the Red Zone I’m not able to respond to direct questions. That’s because I’m struggling to understand the question, I’m struggling to think of a coherent response and I’m not able to formulate the words. I am able to nod or shake my head in response to appropriate questions.
I’ve considered wearing coloured wrist bands, a red, yellow and green one. It would be kind of like a medic alert bracelet. In extreme situations I could just point to the red wrist band. For this to be helpful I need two messages on the band. “I am not in pain,” and “I just need a quiet place.”
I have an idea that many non-ABI people would want one of these wrist bands. Just to give a subtle message when everyone around you is clamouring for your attention; kids, co-workers and…
